Tuesday, June 30, 2009

Recently, I have been observing a new weird behavior in Anna. She will occassionally drop her chin to the right and then roll her eyes up and to the right. It is only for a couple of seconds, and then she is right back to normal.

At first I thought she was just being silly - like maybe she figured out a new trick and wanted to try it over and over again. But, I have noticed her doing it more and more - and to be quite honest, it is a little disturbing when her eyes roll back like they do. I began to get concerned that they may actually be little mini-seizures.

So, I took Anna to the pedi. today. He agreed that this was abnormal behavior and has referred us to a pediatric neurologist and ordered an EEG. The EEG is scheduled for July 6 and the neurologist appointment is July 14.

Here is a little video I took of Anna eating breakfast. She does the eye rolling thing twice in this video -- once right after the second spoonful, and then again at about the 1:11 mark.

This video doesn't really show how freaky or severe the episodes can be. In fact, they don't really look like much at all on the video -- but they happen pretty frequently (at least 7 or 8 times at breakfast this morning), and are an odd behavior. I hope to get more/better video to be able to show the neurologist.

Anyway, I am not sure if Anna having Down syndrome makes her any more suseptible to neurological disorders. I will have to ask the neurologist that question.

Regardless, we are praying that nothing is really 'wrong' with Anna, and that this is just something that she does - for sensory stimulation or for fun. Either way, we pray that we get an accurate diagnosis and appropriate treatment.

Monday, June 29, 2009

This weekend we went camping. 'We' being me, Jonathan, Charlie, and Paige. Also includes Uncle Joel and Aunt Kathleen, and the Lamours (friends we know from church).

Anna stayed with her Grammy and Papa and received the royal treatment. After shedding a few initial tears for her Mommy, they said that Anna was a 'dream child' -- as if I didn't already know that :) We missed her as soon as she left and couldn't wait to see her when they brought her back.

We are not 'hard-core' campers. We do sleep in tents and don't do the water or electric hookups, but we bring just about every other amenity from home to the campsite with us.

This was the first time camping for Charlie and Paige. In the weeks leading up to our camping trip, the most exciting part of the expectant camping trip was 'going pee in the woods'. Not fishing, not sleeping in a tent, not the campfire and S'mores -- but going pee in the woods. I am glad to say that they were not disappointed in the experience. Fortunately, they were equally as thrilled, if not more so, by the other activities of the weekend.

The men went fishing one morning. Charlie caught his first fish! He was very excited about it and is ready to start telling 'fish tales'.

The girls rented a paddle boat and goofed around on the lake. Basically we went in circles because Paige wanted to steer-- and well, need I say more? We did have fun, though.

We also did some swimming at the beach.

And, the tent and campfire did not disappoint the kids either. Neither did playing with the flashlights and the Lamour kids.

This was also Aunt Kathleen's first time camping. In the weeks leading up to the campout, I think Kathleen's biggest fear was the wildlife -- from bugs to bears. Though we didn't see a bear (other campers did), the bugs, in particular the mosquitos, were out in full force. Poor Charlie is literally covered from head to toe in bites.

Fortunately, it takes more than a few bugs to ruin a good time -- and I think that is exactly what Kathleen had! I am not sure she is ready to go camping again next week (neither am I), but maybe in September, or at least next summer. Overall, it was a great family weekend! Tiring and dirty (we had a little bit of rain - but nothing devasting) - but a lot of fun!

Wednesday, June 24, 2009

Monday, June 22, 2009

He was a scrawny little rat-dog.He had bad breath.He begged incessantly while we dined.He tore into unopened packages of food and devoured the entire contents.He barked at every little noise - waking the babies from their naps.He bit my son.He bit Bea.

We can say a lot of rotten things about Cosmo -- but despite all those things, we all loved that little dog beyond belief.

He was such a cute little dog with his floppy ears. He loved to curl up in your lap, and enjoyed warming himself in the sun coming through the windows.

He was smart and could perform many tricks that Kathleen taught him. My personal favorite was 'play shy'.

He was my companion during those many months that I searched for a job.

But, mostly, he was the first beloved dog of my husband and his family.

We are all sad to say Goodbye to Cosmo. Man's Best Friend doesn't get much finer.

Okay, I am a day late posting - but that is because I was so busy celebrating Father's Day that I didn't have any time to write about it.

Yesterday (Father's Day), Pastor John gave a very sentimental message about his father and the lessons he learned from him. It was very touching, and made me think about my own father and the things I have learned from him. Here are a few (of the many) lessons I learned from my Daddy.

(no, that isn't me - that is Paige - but she looks enough like me and my sister that we can pretend that is a picture from my childhood)

Work Hard: My dad is a hard worker and has taught me that a little hard work never hurt anyone. No matter how privileged, the things worth having will not be given to you. You must earn them. And, he always taught me that anything worth doing is worth doing well.

Play Hard: My dad also knows how to have a good time. I am pretty sure I learned this lesson well :)

Family Matters: Even though my dad works hard, work does not consume his life. I played a lot of sports when I was younger, and my dad (and mom) was always in the stands watching and cheering and coaching. He even came to my high school chorus concerts - which I am sure were quite painful :) My dad was always up to going outside to shoot hoops or throw the softball with me. He video taped all of my HS volleyball games and made a 'highlights' video for me. He would proofread my English papers and make constructive comments. He would try to remember how to work those calculus problems :) Dad was always there to give words of encouragment, constructive criticism, and sound advice -- I hope that I am able to be there for my own kids like my dad was/is for me. (You too, Mom -- but this is Father's Day)

Don't Sweat the Small Stuff: My dad is very practical and takes a very practical approach to life. My dad taught me that nothing can be gained from worrying over something you cannot change. That does not mean that you don't care - it just means that you don't go nuts about it. Thus, my fairly calm approach to most situations (except when my child is really injured -- then I freak at first before I regain myself)

Don't Try to Keep Up With the Joneses: My dad was a great provider for our family. We always had a nice home, plenty of food, clothes that fit, and extra for recreation. But, I learned that labels don't really mean anything, other than they cost more. And I learned that one is usually enough, and that there is no need to buy a new one until the old breaks beyond repair (and my dad is the master of repairs!!)Thank you Dad, for teaching me this lesson! I know far too many people who are having financial issues, or who are never content with what they have because they haven't learned this lesson.

The Secrets of the Remote: Okay, I haven't quite mastered this one yet - but I think my husband has!!

And, speaking of my husband, I would be remissed if I didn't talk about the father of my children on Father's Day.

Jonathan is not only the love of my life, he is the wonderful, loving, caring, father of my children. In a lot of ways, Jonathan is like my dad (hey, they say boys marry their mothers - surely then, girls marry their fathers). Jonathan is a hard worker who knows how to have fun; he is creative and clever; he is kind and cares for others; he is firm, but fair.

Our children adore Jonathan. They can't wait for him to get home so they can wrestle and tickle and giggle uncontrollably.

They also respect him and look up to him. They can't wait to show daddy their latest accomplishment or newest trick.

Jonathan is such a great father. He is a man of God and he teaches that to our children. He doesn't just preach the Word, he lives the Word.

Here is a beautiful picture of Jonathan and kids before church on Father's Day.

Wednesday, June 17, 2009

After weeks and months of fretting about Anna being in a holding pattern developmentally, it is such a joy and relief to see her progress over the past couple of weeks.

In addition to waving and babbling, Anna has also finally learned to finger feed herself! Again, a small step for most typically developing babies, but a huge step for Anna, and for most other children with Ds.

I love it that now I can place Anna in her highchair with a handful of Gerber puffs on her tray while I finish making dinner. When I look over at her, she is giggling and smiling, and obviously so proud and excited that she can get them into her mouth all by herself :)

Also, I was finally guilted into getting new shoes for Anna. Oh, they are so cute -- but so expensive! They got full approval from her physical therapist, though, so we will go with it. With her new shoes on, Anna is practicing putting weight on her feet. We practice standing and sitting on a bench. I am sure it will be no time before Anna is surprising us by standing all by herself!

According to the calendar, Summer is just a few days away. According to the thermometer, it is still weeks, if not months, away!

This week Charlie and Paige are taking swim lessons from Ms. Teri. They go at 10:30 in the morning - rain, shine, or freezing weather! Yesterday it was a chilly 62 deg. for their lessons. Fortunately, the pool is heated. They were purple by the time they were through!

This is Paige's first time taking lessons. Charlie took lessons 2 years ago, but he was still a bit too young. He was timid and was reluctant to try what his instructor asked. But, what a difference this year! Charlie is jumping right in, going underwater, kicking and scooping his arms, and trying very hard to do everything that Ms. Teri asks him to do. Paige is also trying very hard, but her attention span is a bit shorter because she is still young. She is doing very well, though, and I imagine that in two years' time she will be swimming like a fish!

One exercise that Ms. Teri has Charlie and Paige doing is stepping through 'Bob'. Bob is really just a big hoop with nylon flaps on it that make it look like a fish. Anyway, Ms. Teri holds Bob, and Charlie and Paige have to go through the hoop. To do this, they have to go under the water a bit. Paige kind of just steps through the hoop. But today, Charlie actually swam through the hoop! He swam underwater through the hoop! He was very, very proud of himself! (and so was Mom!)Anyway, our last lesson is on Friday. I am so glad that the kids are enjoying their lessons, and are not afraid of the water. Maybe I will get that pool membership this year after all....if Summer ever gets here, that is!

Friday, June 12, 2009

Anna's tear ducts in her right eye were blocked which caused her right eye to be all gunky when she woke up, and then watery the rest of the day. We learned at her last Pediatric Ophthamologist appointment that the probability of the blocked duct clearing on its own after 1-yr. of age significantly decreases. So, a minor surgical procedure is recommended.Anna and I (Daddy stayed home with Charlie and Paige -- it was Charlie's last day of pre-school) arrived at the hospital just after 7 am. After a small mountain of paperwork, we were finally registered. Here is a picture of Anna in the waiting room before heading back.

Anna was quite chipper most of the morning. She was the model patient, and she had the nurses eating out of her hands.

They let me carry Anna into the OR and stay with her until she was asleep. If anyone has ever been with their child as they are being put under, then you know what I mean when I say that it is the freakiest feeling/sight ever. I was holding Anna as they put the mask on her. She fussed and fought a few seconds, and then just went limp in my arms. I knew she was ok, but it still freaked me out a little.

The whole procedure was very quick. I don't think I was out in the waiting room more than 30 minutes before the nurse came to get me because Anna was awake. I was so excited to hear my baby crying because that meant she was ok!

She recovered quite quickly. I held her for a few minutes and in no time she was back to smiling and babbling away. She ate a few Kix and Gerber Puffs, and she drank some sugar water, and we were on our way home.

All in all, it was a fairly painless endeavor (at least on my part). Anna is home now. About the only lingering effect that remains is her bloody tears, a la Casino Royale. But, the doctor said this was normal and should stop within a day or two. We have a follow-up appointment in a couple of weeks to verify that the procedure worked (85% chance).We thank everyone for their prayers and well-wishes for Anna. We praise the Lord that Anna is so healthy and that this is the most signifcant procedure that she has had to endure. I know of many other children, with Ds and without, who have to undergo much more serious operations and procedures before they are even a year old. I admire those parents who handle such adversity with so much poise and grace.

Thursday, June 11, 2009

If you haven't seen my previous post about Baby Legs, then here is your chance to get with the program...

On my last trip to Target, which occurs at least once, if not two or three times a week, I looked for, and found, some Baby Legs for Anna. Oh, man -- they are so cute! I just want to eat her up in them!

Wednesday, June 10, 2009

Today was Charlie's pre-school closing program. It was short and sweet; just as it should be - especially for pre-schoolers (no caps and gowns for us!)

Charlie's teacher recognized each of the students individually. She had them answer three questions: 1) What are you proud that you can do now that you couldn't do when you were a baby? 2) What was your favorite part about Pre-school? and 3) What do you want to thank your Mom and Dad for? She called them up one-by-one and read their answers. Below is a video of Charlie's answers.

Then the class sang a song. (see video)

After the ceremony, we went to lunch. When I first asked Charlie where he wanted to go for lunch, he excitedly shouted, 'Subway'. But, as we were pulling into the Subway parking lot, he caught sight of the Golden Arches and he had a change of heart. So, we went to McDonald's for a special lunch, and playtime with some of his classmates who had also conned their parents into taking them there.

Charlie's Grammy and Papa were able to come to the ceremony and to lunch with us. They bought Charlie a set of 'I Can Read' books because Charlie can read! He is learning so much each day. Needless to say, I am so proud of my little boy (who is not so little anymore). I can't believe he is going to kindergarten in the Fall. Oh - and here is a video of Paige singing her version of the song that Charlie's class sang. She is so funny :)

Monday, June 8, 2009

One of the great things about having a child with Down syndrome today is that there are so many people who have worked so hard to make things a lot easier for babies with Ds who are being born today.

Another great thing about having a child with Down syndrome today is that there are so many online resources, connections and communities that we can use to find the answers and support and encouragement and inspiration we need from others who are also going through it, or who have been through it all already.

One such source of inspiration recently found me. Her name is Sarah, and here is a link to her blog - Class of 2008.

It was at 3 pm, which really isn't a great time for Anna because usually she is only about 45 minutes into her 1.5 hour nap. But, we went with it anyway because our schedule for the rest of the week is a bit crazy.

It took Anna a good 20 minutes to warm up to Ms. Catherine, but when she finally did, she was quite the trooper and worked very hard. Ms. Catherine even had Anna bearing weight on her legs and doing some supported standing.

One suggestion that the therapist did have for us was that we need to get Anna a good pair of supportive shoes. She thought the ones Anna had on were cute and all, but that we need to think about function over form, for at least a little while anyway - until she is walking really well.

What?! It is summer! Who wears shoes at all?

And I am cheap. I normally buy my kids' shoes at Payless or Target or Wal-mart. I think it is a splurge to buy shoes at Kohl's.

So, I am on a mission to find supportive shoes that are not only affordable (come on -- $45 for a pair of Stride Rite shoes?), but cute -- any suggestions?

Oh -- and I am so excited --- I found Baby Legs at Target!! I can't wait to make my next daily trip to Target and see what they have in the store :)

And finally, Anna's pre-op doctor's visit was all good today. She is set for her eye surgery on Friday.

Saturday, June 6, 2009

If you have ridden in the car with my kids recently, then you have been a part of this game.

Basically, it goes like this...If you see a yellow car, then you shout out, "Yellow Car!" Then the other passengers in the car try to find the yellow car too.

An odd game, yes - but Charlie and Paige have fun with it.

It started by the fact that Charlie's favorite color is yellow. There is often a yellow car parked on the street on the way out of our neighborhood, and the kids made a game out of pointing it out. Anyway - it soon turned into a game of pointing out every yellow car or truck or bike or trailer or bus that they see.

Jonathan and I have made our own game out of it. We like to spot the yellow vehicle, but wait until the last minute to say, 'Yellow car'. The kids search around frantically, but when they are unable to spot the car in time...then we say, "Missed it!"

A very busy week. Jonathan was out of town. Lots going on with Anna's therapy, and we had a visit from one of our friendly men in blue.

Therapy: Moving Forward, but Not MovingAnna had a great week at therapy! After all of my grumbling, it appears that she (I hope anyway) is starting to make some progress again - yay! During therapy on Wednesday, you could just see how proud she was to be able to perform the skill that her therapist was working with her on.

On Thursday, we had Anna's IFSP (Individual Family Service Plan) meeting to discuss Anna's current developmental status, our goals for her and our strategy for reaching those goals. Since Anna's gross motor skills are farthest behind and her fine motor skills are farther along, starting next week, we will add PT each week, and drop Anna's DT (with Ms. Jeannette) to every other week. So, some weeks she will have two therapies, and others she will have three. We plan to have another IFSP in September to evaluate how this plan is working.

Car: Houston, We Have a Problem.There is nothing quite as annoying as car problems. The minivan (yes, I drive a minivan - stop laughing!) has an electrical issue causing the interior lights to stay on and we are not able to turn them off. This, in turn, causes the battery to run out. Anyway, the car is in the shop and will hopefully be ready on Monday. Hopefully.

Things That Go Bump: All ClearJonathan was out of town this week and one night, after I put the kids to bed, I kept hearing a 'bump' coming from the attic. Normally I would not be too concerned about hearing a strange noise, but we had been out for a walk earlier in the day and had left the garage door open, and Maggie was acting rather skittish. So, it made me little nervous.

Not wanting to go up in the attic to check things out for myself, I decided that the best course of action would be to call the police. Hey, we pay high enough taxes, I might as well get something for my money =)

A few minutes later, Officer Wheeler gave me the all clear - all clear of humans, anyway. I am still not sure what was making the noise, but at least I was able to sleep that night knowing that nobody was hiding out in my attic.

After checking out the attic, I had Officer Wheeler say Hi to Charlie and Paige, who were all too excited to have a real policeman in their house.

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Anna Banana Pants

Anna Banana Pants is our third child who has a little something extra...an extra 21st chromosome. Having a child with Down syndrome is not the life sentence that many believe it to be. In fact, it is the probably the greatest blessing we have received as a family. This blog is about Anna, and our everyday family life.